Tag Archives: heat intolerance

The Teenager had arranged to go out biking with his friends in the morning. That was great – he’s an outdoorsy kid and I’d much rather he was out than stuck in his bedroom in front of the computer screen. He phoned me early afternoon to tell me excitedly he’d been invited to the beach by some of his friends and their parents.

When I got home, he was in the middle of packing his swimming costume, a towel and some money, bouncing around, beaming from ear to ear. I waved him off, sat at the kitchen table and cried.

Why? MS. Extreme heat intolerance means I will never be able to take him to the beach in the summer. I can’t take him anywhere in this weather. Add constant fatigue on top and I’m a pretty useless parent now. I’m only glad we did a lot together when he was younger, before MS reared it’s ugly head.

I’m trying to stay positive. The flipside to my new working hours is that I am always at home after school. He might only want to say a few words/grunts before raiding the fridge, but I listen. I know all the dramas going on at school, I know what homework he needs to hand in and he knows I’m always there for him.

Finding a new way of parenting with MS has been one of the hardest challenges and one we are still working out together. Gone are the days we jumped in the car on a whim and headed off. Everything is meticulously planned now, with one eye on the weather forecast and energy levels.

Years ago I was told that when you give birth to a child, you also give birth to a lifetime of guilt. What you feed your child, which toys you buy, which school you send them to – all are guilt-laden. Throw in a hefty dose of MS and the guilt skyrockets. I’m failing as an active parent. I can only hope that when he looks back as an adult, my son will not remember the times I didn’t take him to the beach, but will instead feel secure in the knowledge that he was always, always the centre of my world.

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As if going through the MS diagnostic process isn’t difficult enough, trying to describe MS symptoms to the uninitiated is even harder.

Take the MS hug. Cute name, excruciatingly painful. The first time this happened to me, I was in the office.

The pain came out of the blue, and as I held my ribs in breathless agony, my colleague politely asked why I was rocking in my chair, making funny gasping noises. After I’d told her it felt like a boa constrictor had wrapped itself round my body, she gave me a curious look and continued typing.

Or the exotically named L’hermitte’s sign. Electric shocks in the neck? Maybe it’s all in my head. Uhthoff’s Phenomenon? Try explaining the torture of frying from the inside out, the complete inability to do anything in the heat. The sadness as you watch the world go by from your window, life happening elsewhere, make-up sliding slowly southwards. Or the tragic look I got from my son the other day when he came home from school to find me with a bag of frozen peas balanced on my head.

Tell anyone else you’re heat intolerant (and it’s even got a fancy name) and you’ll get a barrage of ‘Oooooh, me too! Can’t stand the heat!’ I bore myself silly trying to make them understand it’s not just a case of sitting in the shade with a sunhat on, sipping an icy-cold Pimm’s. It keeps you locked in the house, limbs trembling, industrial-sized fan on full blast. With our current heatwave, even my head is trembling so much I look like a nodding dog. Or a weeble-wobble.

What about neuropathic pain? The constant buzzing, tingling, throbbing, burning in my feet and legs. It’s like having mobile phones strapped to my feet, set to vibrate, with a bit of pincushion-y pain mixed in. Or there’s other days when I can’t feel my feet at all.

But the biggie, as we all know, is the teeth-gnashing frustration of describing MS fatigue. No matter how you explain it to other people, there will always, always be someone who says, ‘Oh, I get tired too. I know exactly what you mean.’ Um, no, you don’t. Now, please run into my fist. I’m too tired to punch you.

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Uhthoff’s Phenomenon (try saying that without sounding like a muppet singing ‘Mahna Mahna’) is a serious problem for lots of us with MS, where heat can worsen our neurological symptoms.

I am therefore establishing ‘The Venerable Order of the Uhthoff Vampires’ and anyone who’s familiar with the following scenarios is cordially invited to claim free membership:

When that big shiny yellow thing in the sky appears, you shake a fist at it before slinking back into the shadows.

You have bought (and discarded) numerous hand-held fans but feel a bit daft using one in public.

When a friend suggests a bit of sun-bathing at the beach, you’re sorely tempted to whack them over the head with their flip-flops.

The very thought of having a sauna is torture and you’d rather pull out your eyelashes one by one.

You quite fancy a nice holiday in Iceland or the Antarctic.

You’re idea of bliss is to open your freezer and stick your head inside.

For the uninitiated, heat intolerance is like pouring hot oil over already-damaged brain circuits. MS means your nerves don’t fire messages properly, but with a bit of luck, they’ll eventually get through. Add a dose of heat on top of this and you get serious meltdown. My body collapses in on itself, my struggling brain shuts up shop and I go a peculiar shade of pillar-box red.

In the summer, my days are topsy-turvey. I get up around 5 am and stumble around doing as much as possible before the dreaded sun starts shining. Then I lurk at home, fan at full blast until early evening when I suddenly come alive again. Or not, if MS fatigue decides to join forces with Evil Uhthoff and create a lethal combination.

I spend hours peering through my windows watching carefree sun-worshippers stroll past, taunting me with their tans, their bright summer clothes and languid chatter. When people visit my tiny haven of a backyard, they admire the plants and hand-made pottery toadstools then remark, ‘shame you don’t get much sunlight here though.’ Um, exactly?’

So join me in the shadows. Don’t lurk alone. Vampires are bang on-trend. Just look at Edward Cullen and his Twilight buddies (I do, a lot, much to The Teenager’s eternal embarrassment).

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I have two family gatherings in the next couple of days. I love my family to pieces and adore spending time with them. That’s not the problem. It’s the uninvited guest who always tags along with me that’s giving me palpitations.

I am an awkward guest now, like the Mad Aunt everyone knows they have to invite but aren’t quite sure what to do with. Chairs and parasols are rearranged in the garden thanks to heat intolerance, guests look away politely as I spill my drink thanks to dodgy hands and my jokes fall flat as I suddenly can’t remember all-important punchlines thanks to cog fog.

Don’t get me wrong, my family are wonderful, it’s just that MS has driven an invisible wedge between us. Sitting in a dark, shady corner watching everyone else bask in the sun is a metaphor for life with MS.

So, I have some pre-prepared answers ready to lessen the awkwardness and make me appear slightly less tragic:

‘You keep yawning, are we keeping you up?’

– ‘Hell no, was out last night dancing on the tables, fabulous time, wasn’t back til 2 am’

‘Hey, come out into the sun!!’

– ‘S’ok, Vogue said pale is the new tan’

‘Whoops, careful’

– ‘No worries, it takes skill you know, to trip over a flat surface and I’m the champion’

Good plan, no? My family all know I have MS but I don’t really want to belabour the point, and as most of us with MS know, trying to describe the symptoms is not for party-talk, it’s a full-blown maudlin evening over wine, Pringles, low-burning candles and Edith Piaf in the background. And anyway, I feel awkward enough without wanting everyone else to feel the same way too.

So I will try my hardest. I will take part in pass-the-new-baby-around, but perhaps pass him on a little quicker than the others. I will grip my wine glass with two hands, as if I am drinking from a chalice. I will pinch some ice cubes and surreptitiously pop them down my top. Above all, I will attempt to leave my uninvited guest at the door, just for a while….

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MS is a bizarre illness – there are hundreds of combinations of symptoms and no one person’s MS is the same as another’s. It’s like an MS pick-n-mix, except MS does the choosing. We just weigh and pay.

What’s most frustrating though is the sheer contradiction in symptoms. One day I’ll have all the windows open, the fan going at full blast, an arctic wind whipping round my feet. The next, I’m chilled to the bone, wrapped in my duvet clutching my hot water bottle.

Or there’s the foot-drop – the days when my feet decide to do an Irish jig and every pavement becomes a minefield, in sharp contrast to other days when my legs are rigid and I walk like a wound-up robot.

On top of that is my old nemesis, MS fatigue, the bane of my life. Striking at any time, it drives me to my sofa, everything else on hold until normal service resumes. So why do I also have periods of extreme insomnia? Nights when I sit downstairs listening to the shipping forecast and World Service into the wee small hours.

It’s not just the physical symptoms – my emotions swing from one extreme to the other too. On Sunday I was feeling on top of the world but on Monday I had one of my gloomy days. Nothing had happened to explain it. Perhaps it is the daily pressure of trying to maintain a normal life while coping with the whole MS thing, who knows?

I’m off to the Hay-on-Wye book festival with friends today, a trip I’ve been looking forward to for months. Apart from the haematoma on my leg which is still as painful as ever, I’m praying that the fatigue also takes a day trip, in the opposite direction. I’m hoping it won’t be a day when I just want to go back to bed, pull my duvet over me and shut out the world.

MS can be a very unsociable illness and not knowing from one day to the next just what it’ll throw at you makes life even more difficult to plan, but for today, I am going out whether MS likes it or not. So if you’re in Hay-on-Wye today and see a chubby-faced woman fast asleep on a deckchair, that’ll be me.